Is SCAD rare? Or just rarely diagnosed correctly?

10 Feb

by Carolyn Thomas   @HeartSisters    February 10, 2019

I was happy to see Katherine Leon featured in The New York Times recently. Katherine, like me, is a graduate of the WomenHeart Science & Leadership patient advocacy training at Mayo Clinic. She told the Times of undergoing emergency coronary bypass surgery at age 38, several days after her severe cardiac symptoms had been dismissed by doctors who told her, “There’s nothing wrong with you.” She isn’t alone. Many, many studies have shown that female heart patients are significantly more likely to be under-diagnosed – and worse, often under-treated even when appropriately diagnosed – compared to our male counterparts. This is especially true for women with her condition (Spontaneous Coronary Artery Dissection, or SCAD) that was once considered to be a rare disease. Dr. Sharonne Hayes is also featured in the NYT piece; she’s a respected Mayo Clinic cardiologist, longtime SCAD researcher and founder of the Mayo Women’s Heart Clinic. (You can read their story here).

But almost as soon as the Times piece was published online, I was gobsmacked to see some of the reader comments coming in – especially comments from people like these:  

Chris (New Jersey): “I work in an emergency room. No one’s symptoms are trivialized because of their gender. That is absolutely ridiculous.”

KSK (Maine): “I am an Emergency physician. I am aware of bias in medicine against certain groups and I strive to avoid it in my own practice, but I feel articles like this confuse bias with diseases that are made difficult to diagnosis based on their rarity and/or unusual symptoms. Also worth noting is danger of over-testing, especially invasive testing. It’s a difficult problem for medicine, but I am not sure how much of a role gender bias plays.”

John Wesley (Baltimore, MD): “This is OLD NEWS. 2003 was more than just 15 years ago, it was a generation ago in terms of having access to troponin testing , sophisticated heart scans, ultrasound at the bedside, and widespread certification and training in emergency medicine.  Heart attacks in 40-year old postpartum women simply don’t commonly get ‘written off’ by sexist, uncaring doctors. I think it IS important to alert female patients that they can have heart disease at a young age, and we do need to fund more gender and age specific studies in medicine, but if you have symptoms like this woman had and you go to Emergency in 2019, you will get the care and diagnosis you need. It has nothing to do with medical school curriculum, physician ‘wokeness’ or mysogyny.”  

James Strickland (Wilson, NC):  “This is an inflammatory article that has no basis for declaring there is gender bias. SCAD also is even rarer in men but does occur. If the diagnosis is missed on a man, can one claim gender bias? I think not.”  . CAROLYN’S NOTE: Strickland’s comment could not be left alone, as these three readers quickly demonstrated:

Dr. Hayes might have been as dismayed as I felt by those gender-bias deniers – especially those who identify themselves as physicians (and apparently the kind who believe some variation of “If I don’t know about it, it does not exist!”) 

When I objected on Twitter to these hostile reactions,  she tweeted back:

And for people like John Wesley who continue to insist that the misdiagnosis that happened to Katherine Leon in 2003 could not happen in modern times, consider the more recent experiences from these NYT readers suggesting that, yes, indeed, it can and it does:
.

Nicole Miller (Connecticut): 

I had a SCAD in 2017. The ER doc told me he would be concerned with my symptoms if I was a male. He basically wrote me off. I even have a family history of heart issues. An hour later, I had a full-blown heart attack in the ER and was rushed to the cath lab. The surgeon knew instantly what to look for, and I received 3 stents. I can attest to the bias with women’s heart issues. It occurs on a regular basis. And we aren’t that rare. There are thousands of us with SCAD, and no confirmed cause.”

Holly (Ohio):

.“I sat in the ER for over 3 hours having a heart attack before the troponin results came back. And it took them another 2.5 years and another heart cath before they decided that it hadn’t just been an unusual type of clot but had actually been a SCAD (in 2014 and 2017 respectively). They still have so much to learn.”

Audrey (Chicago):
.
“SCAD is not rare. I was a perfectly healthy 52-year old experienced physician, also not familiar with SCAD, when I experienced Sudden Cardiac Arrest. I survived thanks to my 15-year old son and paramedics with an AED (Automatic External Defibrillator). The initial team of doctors, unfamiliar with SCAD, attributed my troponin level (over 100x normal) to damage from the CPR. They overlooked a second MI (heart attack) which occurred in the ICU on the same night. They didn’t see the dissection on the angiogram, which was later confirmed by two other teams of cardiologists familiar with SCAD.  Sometimes doctors don’t see things if they aren’t looking for them.”

Cardiologist Dr. Sharonne Hayes reinforced that last reader comment from physician/SCAD survivor Audrey on whether SCAD is actually “rare” at all.

Here’s how Dr. Hayes responded to this question from another reader who asked if SCAD is really as rare as we believe, given “so many personal stories of SCAD in the comments that perhaps it isn’t so rare? Where do the numbers on how rare it is come from?”

Dr. Hayes replied:

A: “Thank you!  SCAD is not rare. It’s ‘uncommon’ as a cause of heart attack overall. It is the #1 cause of heart attack among women who are pregnant or have recently given birth, and women under age 40. It’s estimated that SCAD is responsible for 1-4% of heart attacks.”

Personally, I was heartened to read, despite the knee jerk defensiveness of some physicians listed here in response to this article, that there were a number of supportive comments from other docs like these:

The East Wind (Raleigh, NC):

“I will never forget the patient I admitted to the ICU with acute respiratory failure and acute congestive heart failure in the setting of an acute MI (heart attack). After she was stabilized, I looked over her medical records and saw she had been in the emergency room 5 days prior to coming in to my service in extremis. Her chief complaint 5 days earlier: ‘I’m having pain in my neck like when I had my heart attack.’  Treatment: No EKG, no labs, but a prescription for Valium. It is sometimes down right criminal. Hysterical woman.”

Hey Nineteen (ChicagoI was treated horribly in the ER at one of America’s ‘best hospitals’ and I’m a doctor; they knew I was a doctor and I trained at that same hospital! Then, responding to their request that I review my experience, I wrote a scathing review of their substandard, disinterested care and received… nothing, not a single reply. Unless you’re a major donor, a department chair, on the board, suffer a malpractice-level outcome or can prove a racially-biased disparity in treatment, no one will care about your complaint.   A 30- or 40-something white lady’s laments about not being heard will not be heard either. ERs are evaluated on the rapidity of their response, not the correctness of their response. Maybe if staff stepped away from their computers for a moment and spent a fraction of the time they spend documenting service actually delivering service, we’d have better outcomes across the board in medicine.”

How does Spontaneous Coronary Artery Dissection (SCAD) happen?

According to The SCAD Alliance (a non-profit organization “committed to improving the lives of SCAD patients and their families through education, advocacy, research and support”):

“The inner lining of the coronary artery splits and allows blood to seep into the adjacent layer, forming a blockage or continues to tear, creating a flap of tissue that blocks blood flow in the artery. It strikes without warning, traumatizing survivors. The cause of SCAD is currently unknown. Most doctors are unsure how to treat it.”

 

 

 

Q:  What was your own response to the NYT SCAD article – and to the comments?

See also:

8 Responses to “Is SCAD rare? Or just rarely diagnosed correctly?”

  1. Sandra Sizer February 10, 2019 at 7:37 am #

    I’m a long-time subscriber to the NYT, so yes, I read this article. And shuddered.

    Even though I’m older [82] so possibly outside the age range for SCAD, my blood boiled at the idea that so many young[er] women are put at such severe risk by such mindless, careless, clueless misogyny.

    I had a major dose of this last week when I tried to refill my scrip for nitroglycerin and was told by a supercilious, condescending young male pharmacist that I was overusing the nitro and was developing a high tolerance.

    [I checked the FDA and NIH sites and found that nitro tabs stay in the bloodstream for no more than 10 minutes. Which could be why my cardiologist wrote the scrip to be used “every five minutes as needed.”]

    “Do you have angina every day?” the pharmacist asked, with the kind of knowing smirk on his face that a man gets when he’s showing how patient he can be when dealing with a “difficult” woman.

    “YES!” I yelled: I have microvascular disease. I have angina on exertion and angina at rest.

    He mansplained to me about overusing nitro. [Mind you, he did not have a solution, but I guess he preferred that I withstand the pain rather than take the nitro.]

    I went ballistic. I was shaking and in tears — and I don’t cry easily — I think I nearly had a MI right there in the drugstore. Long story short, he finally got dealt with to MY satisfaction. I believe that although the problem of refilling a scrip is a relatively minor problem, it’s highly illustrative of the dismissive attitude held by men, and not just doctors.

    Liked by 2 people

    • Carolyn Thomas February 10, 2019 at 11:52 am #

      Oh good grief, Sandra! That pharmacist is an example of how a little knowledge is a dangerous thing. (Perhaps he was thinking of the nitro patch which does carry a risk of increased tolerance if the patient doesn’t take a break from wearing it?) But his assumption seems like he was lecturing a stupid old woman who needed his expertise…

      I’m so very disappointed to hear that a PHARMACIST was behaving like this. I usually recommend pharmacists as an under-valued partner on our healthcare team, but your guy needs some remedial education about taking nitro for angina (maybe from pioneer cardiologist Dr. Bernard Lown – nobody explains how to take nitro better than he does!)

      I don’t normally recommend that heart patients go “ballistic” in public, but I’m sure it got the attention of the pharmacist (and everybody else in the shop!)

      Liked by 1 person

      • Sandra Sizer February 11, 2019 at 5:02 am #

        This Boston. In Boston, particularly in a small privately owned non-chain pharmacy, it’s not the done thing for people [the few who were there] to acknowledge someone going “ballistic” ;)) And although this jerkball didn’t get the message, his boss certainly did.

        Liked by 1 person

        • Carolyn Thomas February 11, 2019 at 6:38 am #

          Oh good… If you’re going to be condescending toward your customer, please do it in front of your boss… That story reminded me of picking up a prescription for my newborn grandbaby (whose parents were at home worried sick about a sudden scary medical issue). The pharmacy had called to say ‘it’s ready’. But when I arrived minutes later, the prescription was not ready, and the (very young) pharmacist started making jokes (JOKES!) about how “some new parents” get way too upset over every little thing.

          “Do you have a sick newborn baby at home?” I yelled at him. “Have you EVER had a sick newborn baby?” followed by a 2-minute lecture on how much he clearly needs to learn about sick babies…. If I’d had a heavy brick, I would have thrown it at him.

          Like

    • June Triplett February 11, 2019 at 4:49 am #

      Sandra – That was a “Twilight Zone” experience! I’m sorry you got mistreated like that, horrible.

      Liked by 2 people

      • Sandra Sizer February 11, 2019 at 6:39 am #

        Thanks, June. It was surreal and so totally unexpected from a pharmacist, which is why I lost it and began yelling at the guy. I seriously doubt I’ll be treated that way again at that pharmacy, but I’m equally sure I’ll get the supercilious, condescending bit from other medical personnel under other circumstances.

        I think it’s important that women speak up forcefully [even to yelling at the offending male] in response to this kind of treatment. A man wouldn’t put up with this kind of treatment. Neither should a woman.

        Liked by 1 person

        • Carolyn Thomas February 11, 2019 at 6:45 am #

          And not only would a man not likely put up with this kind of response, but pharmacists would not likely speak to their male customers in that kind of condescending tone…

          Liked by 1 person

      • Carolyn Thomas February 11, 2019 at 6:40 am #

        I agree, June. Horrible, and so inexcusable…

        Liked by 1 person

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